Friday, November 18, 2016

Impartial

This week in our CDKL5 support group we welcomed so many new
families who have babies. I now consider anyone younger than Sonzee a
baby and I am struggling with the realization that in just three short months
she will be two. This is a challenging concept to wrap my head around for
so many reasons; I am having trouble picking the ones to focus on for this
post. With the challenges her 21 months of life have thrown at her, I am
really proud and content with the place she is currently, however, I cannot
ignore the elephant in the room that says, "None of the past 21 months has
been normal, and none of it is fair". I really think that the best
lesson of my life I learned in 5th grade with Miss Bailey when she introduced
our class to the word "impartial" with the sentence, "Life is not
impartial". Nothing like a great review of 21 months to say,
"Miss Bailey, you were absolutely correct".

Sonzee is alive,
she is absorbing food, she is healthy..., but we should not have to think about
these things. I should be chasing a toddler around my house; picking her
up from the ground as she falls as she runs after her siblings trying to join in their shenanigans. I should be
enrolling her into dance class with Miss Jenny and Miss Emily. She should
be running around the gym with Coach Susan. The appointments I make should
not be with neurology, gastroenterology, pulmonology, ophthalmology, and/or
interventional radiology. I should not be parking in a handicap parking
space and unfolding a stroller with a blue placard that explains it is being
used as a wheelchair.

My favorite part
of having three girls is opening up the drawer of clothing and reminiscing over
what her sisters did while wearing each outfit, knowing how every fade, stain,
and spot was caused. I love when her sister says "that laeya's? That not mine. That Sonzee’s?"
Words I most likely will not ever hear come from Sonzee's mouth.
The clothing will be passed down to her baby cousin, and it will bring me
so much joy and happiness to watch her do the things in them that Sonzee has
not, but it will also sting. This is not how it is supposed to
be. My heart hurts.

When I look at
Sonzee while she is in the pool with children her age it is completely mind
boggling that they are the same age. When children her age walk up to the
stroller it stings when they say "baby", not because they are calling
her a "baby", but because they are absolutely correct, she looks and
acts like a baby. It is the truth that hurts. It is our current
situation that is painful. I do not understand why this had to happen to
her. I honestly do not try to make heads or tails of it, but I wish I
knew why she has to suffer.

As each day goes
by I am so thankful that she is still here with us, but it also gets scarier
for me to think "how much time does she have left". While I am
being honest, there are days when her suffering is just so horrific that I wonder,
"Which outcome is better for her?" There have been days during
the past 21 months that I have wondered which box to check off when they ask
about 911 or comfort measures. These are not the type of parenting
questions I should be answering about my 21-month-old child. This is not
fair.

There have been
many positives that have occurred over the past 21 months, but none of them
came without having to battle. Nothing since her birth has been easy, and
nothing about her future will be either. Each day since her birth I have
lived on a tight rope trying to balance. The atmosphere in our lives each
day over the past 21 months has been dictated by how she feels. We live
in a constant state of limbo while walking on eggshells hoping and praying that
no matter what, a rebound will occur. As I previously stated, today things are going well because things are going well for Sonzee, but it does
not change the aching pit in my stomach of how different this life is from the
one I envisioned. I wish our family had never known of CDKL5, but as I
learned in grade school about 22 years ago...life is not impartial.